I received an organ transplant. AMA

[Rockmehardplace]

I’m 5e recipient of a donor organ from a stranger. AMA

Hi - a friend of mine is having a transplant, hopefully within the next month or two. What is the best support I can offer her?

Well done you for being so thoughtful! It’s practical help I found the most useful - someone to collect my dirty washing from the hospital & bring me clean stuff in, to make me dinners for when I came out, could you do an hours cleaning for her once a week? All the little things that you are too weak to do post transplant.

Maybe set up an email group for the friends/family who will want to know how she is recovering so only one person needs to contact the hospital & can then update it veryone on the group chat?

What was donated? Apart from your health, how has it impacted on you?

How long did you have to wait to be matched to a donor and why?

I received a donor heart due to a hereditary heart condition, Waited 18 months and was only on the routine list which meant I was able to stay at home during this time, I expected to wait much longer!

Apart from health wise, it’s making me reevaluate my whole life. I want to change career and do something more ‘worthwhile’.

Did you find out much/anything about your donor, and whether you did or not, did/do you want to?

Recipients are allowed to know three things about their donor - whether they were male/female, what decade of life they were in and whether their death was caused by natural causes or trauma. I chose to find out this information about 6 months post transplant.

I would LOVE to know more.

Did you find that anyone treated you differently after you had the transplant (or while you were waiting)?

Is there anything you are now prohibited from doing (or choose not to do) because of it?

(Thank you so much for this, I find the fact that doctors can transplant organs into people who need them utterly mind blowing)

Do you have to take much medication now? More or less than before the op?
Did you have to shield?

I take a lot of medication now, but not that much more than pre transplant really. Though in the months immediately afterwards, I had to take LOADS of medication.

Embarrassingly, I want to tell everyone I’ve had a transplant when I first got home, like cashiers in Tesco “that’ll be £20.” “ ok, I’m glad to be out shopping - I’ve just had a heart transplant!” {blush}

People treated me differently when I was still very obviously unwell but now it’s like it never happened!

You are limited on what you can eat, as you ate more prone to food poisoning, so no bbqs, buffets etc due to food hygiene issues, no grapefruit.

What life expectancy have they given you with the new heart? There was someone in the news recently who survived 30 years after a transplant, which is amazing.

Also have you developed any likes or dislikes? I’ve heard of people inheriting things like that from a donor, such as a liking for a particular food.

You aren’t meant to get tattoos or Botox post transplant either, or wax any body hair, so I’ve switched to sugaring. Tho the urge for Botox is calling me!!

My drs and I are hoping for 25 years plus with the new heart. I’m absolutely determined to make it. My donor was just a few years younger than myself so I feel I have a chance of a ‘natural’ lifespan, if that makes sense?

Post transplant I’ve started drinking milk, which I didn’t like before, and have an obsession with pineapple. I liked it before but not to this extent!

I’ve taken up gardening, which if you knew me pre transplant was NOT me!

Could you tell us more about your quality of life, please? You mention having to take lots of pills, but otherwise, does your new heart work? By which I mean, can you do vigorous exercise, or is it more of a case of not doing anything super tiring?

What is it about the heart that makes it a match? I imagine the size of heart must be relevant.

Asking because I was a stem cell donor a few years ago for a family member and we were actually different blood groups. It was interesting to learn that it's not the blood group which matches; it's more complex, something to do with proteins on the blood cells. I was even more interested to learn that the recipient's blood group changed to mine post-transplant. I guess it's logical really but it blew my mind!

I can live a pretty much normal life now. I’m waiting for specialist physio to show me how to exercise properly (you have to be v careful warming up/cooling down as the new heart doesn’t have nerve endings. In another 6 months time I plan to be much fitter.

Still need a nap most days though!

I find the changing of blood groups in stem cell transplants mind blowing too!

Hearts are matched by blood group, tissue type, approx height & weight of donor/recipient, ideally by sex & age (tho these are just preferable, not actually required).

This is a fascinating AMA.
Congrats on a successful transplant @Rockmehardplace
You say you want to change careers - from what to what?

Agree this is fascinating. Thank you

I think I’d like to change from a public sector role to social work. I feel I would be good for advocating for people. Or just something more meaningful - all suggestions welcome lol.

I hope this encourages people to have discussions with their families about organ donation and make their wishes known. I know we have assumed consent now but families still get the final say.

Gosh, I didn't realise that. So if an adult has expressed a wish to donate and carries a donor card, could their next of kin override that wish?